Some more notes from abroad (Poland)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby costumenastional » Wed Apr 07, 2010 1:52 am

Don't be nervous. We all know that everything is to be expected, good and bad. Just keep going, hope for the best and keep the rest of us updated as you so kindly do.

Thank you.
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Postby Trent » Wed Apr 07, 2010 6:45 am

Is anyone posting here PPMS? I was dx in late '80's and would love to know of other PPMSers results with Dr Simka.
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Postby moochsid » Wed Apr 07, 2010 10:16 am

Trent wrote:Is anyone posting here PPMS? I was dx in late '80's and would love to know of other PPMSers results with Dr Simka.


Iza is SPMS and I don't personally know anyone with PPMS but I seem to remember reading on another thread about the relationship of azygous blockage and PPMS. Perhaps if someone with a more archival mind is reading this they could suggest the link.
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Postby moochsid » Thu Apr 08, 2010 2:02 am

I put a query about post op supplements here
http://www.thisisms.com/ftopict-11063.html

Wondering when to start up the old regime of LDN and supplements again

Sorry for the double posting .Belt and braces I suppose.
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PPMS

Postby livabird » Thu Apr 08, 2010 3:47 am

Hi Trent,

My wife Livabird has PPMS and has had for over 30 years...
I am taking her to Katowice on April 19th to have the treatment, date of treatment is the 22nd of April.

I will be starting a new forum here on thisisms... to put updates in hopefully on a daily basis
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Postby moochsid » Thu Apr 08, 2010 7:41 am

Trent wrote:Is anyone posting here PPMS? I was dx in late '80's and would love to know of other PPMSers results with Dr Simka.


I think edser from Cork in Ireland was PPMS and although haven't seen his name in the last month or so it might be worth searching his posts. I think he had pretty good improvements.
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Postby livabird » Thu Apr 08, 2010 8:53 am

I HAVE PPMS AND AM BEING LIBERATED IN POLAND APRIL 21. TIGER TIM HAD THE PROCEDURE HE HAS PPMS AND IS SHOWING IMPROVEMENT
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Postby Donnchadh » Thu Apr 08, 2010 9:07 am

I have been diagnosed as PP MS by neurologists but since there wasn't any problems with my azygous veins, according to Dr. Zamboni's criteria I should be re-classified as SP MS.

While my veins were open, I experienced dramatic improvements in my symptoms. When they relapsed, all my old MS symptoms returned.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby moochsid » Thu Apr 08, 2010 9:24 am

Donnchadh wrote:
While my veins were open, I experienced dramatic improvements in my symptoms. When they relapsed, all my old MS symptoms returned.

Donnchadh

So sorry to hear about your relapse-something I'm concerned about re the side that was ballooned.
Did you have the opportunity to stipulate to stent or not to stent?
I just read on berries' thread that she seems to have had an ongoing chat with Dr Simka during the procedure, something that was missing (so, I presume, was the good doctor himself) during Iza's op.

It seems to be the luck of the draw sometimes whether they just plough on and stent or take time out to discuss options. Personally at this stage I think I am pro-stent. At least I am more focussed on restenosis problems on the ballooned side than potential stent migration issues. Only time will tell I guess.
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Postby Trent » Fri Apr 09, 2010 2:12 am

Thanks for all your posts re PPMS.

It seems as if the Polish clinic will take all patients and just see how it goes. Perhaps it may be possible to request stents to get round the possibility of collapsing ballons, but surely they must take that into consideration? Are stents less safe than balloons? But then if balloons collapse...........?

Their website - Euromedics Poland - indicates that after scans they may decide not to proceed. Do they give a refund? Are there folk here who have been declined at this stage, and if so, what percentage or category of patients are declined?

I saw somewhere about a trip to Poland from Scotland via rail to Heathrow and a lost wheelchair on return. Wizz Air fly to Katowice from Doncaster about 3-4 times weekly, late evenings. I think there is a bus link from the station or a taxi might be better.
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Postby xia » Fri Apr 09, 2010 5:05 am

hi Mooch

Sorry to hear about your journey home, but its great to hear about Isa's improvements so far. Her improvements sound very similar to mine. ;)
It was great to meet you both and im very interested to hear how Isa gets on in the future.
About the doppler scan...
It seems that the mrv results were conclusive enough for me to not have the doppler ultrasound, maybe we got our wires crossed ;). Did you manage to contact them about a refund?

Say hi to Isa for me

Xia
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Postby moochsid » Fri Apr 09, 2010 6:43 am

Hi Xia ,
Yes the journey back was a bit fraught but Iza rode it out well. Trent there was no problem with wheelchair assistance on the Polish side with helpful assistants in wheelchair logo tabards escorting us and arranging lift service and transport where necessary. It was only in Britain that it went pear shaped and a total scramble with wheelchairs getting lost and being put on the train to Leeds instead of Edinburgh.

Xia,sorry I thought it was you who remembered the gel for a Doppler ultrasound, too much polish vodka maybe.

On the subject of refunds I think you'll find it all laid out on the bank transfer demand e-mail where it notes what gets refunded if the full procedure doesn't go ahead. Someone was of the opinion that the Doppler price is quite minimal although I would have thought that Dr Simka's non-appearance might count for something. Not sure if we'll sort that out if and when we go back for a follow up as we might rely on Glasgow for that.

If however restenosis happens and requires action maybe the Doppler issue might be a bargaining tool. Xia are you less worried about restenosis seeing as you've got two stents? I must say I'm more concerned about the ballooned side than the stented. Iza still has some soreness/stiffness the stent side but nothing serious.
Hope you continue to make strides and I have sworn to get Iza up and dancing to Second Class citizen cd! All the best Kevin and Iza
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meds after procedure

Postby annie66 » Fri Apr 09, 2010 3:57 pm

Hello,

I am curious to know if medication is required after the procedure, and if so which medication is it. Do you need health insurance coming from Canada to get meds or do we pay cash

Any help would be appreciated as my boyfriend heads to Poland May 26-27.
Thank you
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Postby Downunder » Fri Apr 09, 2010 5:16 pm

Trent wrote:
Perhaps it may be possible to request stents to get round the possibility of collapsing ballons, but surely they must take that into consideration? Are stents less safe than balloons? But then if balloons collapse...........?
.


Trent, you may be under a misconception.
The balloon is used to stretch the vein and is then removed (otherwise there would be no flow through the vein at all).[/u]
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Misunderstanding and further query

Postby Trent » Sat Apr 10, 2010 1:58 am

Thanks, Downunder. Yes, I was clearly mistaken. I was thinking stents were an option to some sort of other metal 'expander'. So is the option stent, or no stent? Or am I still missing something?

Another thought: we have been lead to understand that our MS symptoms are due to demyelinisation of the nerves, preventing messages getting through. If this is the case, how is it that suddenly with this proceedure (some) symptoms disappear and (some) normal functions may be (instantly) restored?
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